One of the problems with understanding and treating autism is realising that it is a “spectrum”. The difficulties experienced by one autistic person can differ vastly from those of  another. I, personally, am able to lead a fairly “normal” life. I can work, live on my own, and generally take care of myself without being a burden to the state or my family. Others cannot. So I can understand that the families of autistic children who appear unlikely to be able to live independently as adults would like to “cure” their children. I don’t have a problem with helping people to develop the skills they will need in the future, but I do have a problem with thinking that autism is something that needs to be “fixed”.

Are people with autism defective in some way? Is it really a disability? I don’t see myself as disabled. I see myself as different. My mind appears to work very differently from that of the people around me. Then again, do others really think alike? How am I supposed to know? I grew up feeling very isolated and alone, but I thought that everyone ultimately felt that way. People often complain that no one understands them. So are my mental differences just part of my individualism, or are they because I am autistic? Is the autism part of what makes me me? Yes, I would like improve my social skills. I would like to be able to make connections with people. I would like to not freak out every time I need to call someone on the phone or order a pizza. Nevertheless, I don’t want to stop being me. I don’t want to deny or remove those things that make me unique, and perhaps my fears and oddities are part of that. We all of things we don’t like doing. We all have things we are afraid of. I am scared of changes in my routine and talking to strangers. Someone else may be afraid of death. Who is to say which fear is “normal” and “acceptable” and which is not? I can learn skills and train myself to be able to perform the functions I need to, but that doesn’t mean the fear and insecurity will ever leave. For example, I can make myself call strangers when absolutely necessary, but I doubt I will ever do it willingly or joyfully. It will probably never be a completely easy thing for me to do, but who cares? Why should it be? If we have no fears, we have no need of courage, but that’s a topic for another day.

Back to talking about cures for autism. I understand that it’s important to help children learn to communicate with others, and many autistic children need a lot of help in this area. I am not against that. I just don’t think we should see these treatments or therapies as “cures”. Many people with autism are intellectual geniuses. If we “cure” their autism, will we also destroy that side of them? By trying to make everyone “normal” aren’t we just encouraging everyone to be mediocre? After all, isn’t that what “normal” is? Rather than helping autistic people live “normal” lives, wouldn’t it be better to encourage us to live the extraordinary lives we could achieve? Maybe we have been purpose built to be more than normal. Maybe it doesn’t matter if we can’t hold down an “ordinary” job, because we may actually be more suited to an “extraordinary” job. Shouldn’t the focus be on finding our strengths in our autism, than trying to strengthen our weaknesses?

I want to reiterate that I am not against helping people gain skills that they will need in life. There are things that I can do and take that could help me focus and communicate better. That’s true whether you have autism or not. Healthy living in general will improve your quality of life. Go ahead and try therapies and treatments that will improve your daily functioning. Just don’t get into the mindset of thinking that there is inherently something wrong with you if you have autism. I’m not disabled; I’m just different.

Today’s big news is Cate Blanchett’s involvement in advertisements advocating carbon taxing in Australia. Critics say that she is too rich to have an opinion. Since the carbon tax won’t directly impact her personally and have nothing to do with her job as an actress, she shouldn’t be allowed to express her views on the subject. Never mind that these same critics are not afraid to express their opinions on anything and everything. Does being an actress mean that Cate Blanchett should only have opinions regarding acting? Everyone and their dog is free to express their opinions these days, thanks to the internet. Blogs, Facebook and Twitter (just to mention a few sites) are full of people sharing their unsolicited views. And why not? Does being famous mean you should have no voice? Not to mention that it’s erroneous to say that Blanchett will not be affected by the carbon tax. Environmental issues concern us all. So regardless of whether or not I agree with her views, I support her right to express them and to use her fame and influence in any way she wants.

On a completely different topic, I have launched my Intuitive Mandalas blog that I mentioned in my last post. I was aiming for a mandala a day, but that hasn’t really worked out. Not that surprising really… Nevertheless, that’s where you can find my intuitive mandalas and perhaps get a glimpse into my psyche.

Verbal communication is hard for autistic people. Some people classify Asperger’s Syndrome as “high-functioning” autism, because many people who suffer from this are still able to communicate verbally, whilst those with “low-functioning” autism can’t. Very few people realise that I am an aspie because I can speak fairly loquaciously. What they don’t realise is that I didn’t actually learn to speak until I was about 5 years old, after which I was able to speak rather well, parroting things I read in books. I now know that this is quite a common phenomenon. Parents and teachers “forget” the earlier communication difficulties because once the child is able to speak they are able to use big words. Regardless of my apparent verbal skills, I often find it very difficult to express myself verbally. Sometimes I think I’m going to explode with the suppressed emotions I have churning within me trying to find a way out.

This is where non-verbal therapy comes in. As a child I loved music, dance and art. They gave me an outlet that didn’t require words. As an adult, I realise that I need these forms of expression. I don’t think I’m a particularly talented artist, but what I do isn’t about producing “fine art”. It’s about letting out what’s inside me. It’s about being able to be honest.

Over the weekend I attended a “Mandalas and Meditation” workshop. We basically learnt some of the history of mandalas, meditated, then drew mandalas. These days it would be called “Intuitive Art”, meaning we drew from our hearts rather than sitting down and planning the art. What was different from my usual practice, was that after we had finished our drawings, we would put them on the wall and look at them. I have never really looked at the things I draw, or listened to the music I play, or video myself dancing so that I can watch it later. I have always used creative art to express myself, but I realise now that I had missed the next step of acknowledging myself. Looking at the artwork after I had finished forced me to see myself, and I had to accept what I saw. I don’t know if I am expressing it accurately, but it was amazing.

Well, the outcome is that I am aiming to draw a mandala a day and post it on another blog. Carl Jung saw mandalas as an expression of the unconscious self. I don’t think this applies to just mandalas, but really to any intuitive art. I’m curious to track what my art will show over time. I”ll post a link here once the new blog is up and running.

Take, for example, the throwing of the bride’s bouquet. In movies all the single girls excitedly gather in a giggling gaggle to catch the bouquet in good-natured competitiveness. At every wedding I have been to, the single women have to be dragged out of their seats to very reluctantly stand in a small group (it’s always a very small group because more than half the single women manage to hide elsewhere and not join the group). The bride then tosses the bouquet, and the women scatter. The bouquet ends up on the floor, and the unlucky lady who is standing closest to it is forced to take it. I don’t get it. I just don’t get it. Why bother with this tradition if it’s no fun? Why pretend to not want to catch the bouquet? Why all the reluctance? It’s just so dumb, and in my opinion totally ruins the fun. I don’t want to get married, but I think it’s in the spirit of weddings to pretend that you want to catch the bouquet.

I’m jumping the gun here a bit though, so let’s start at the beginning… I was asked to go earlier to help out with preparing the decorations and afternoon tea that was to follow the wedding. No problem! Give me a task and I will do it. Things were going well until I ended up in the kitchen helping to prepare the food. Now, I don’t have a problem with being in a kitchen, but there I was, in a small space surrounded by women. Lots of women. All the high-pitched chatter made me feel like I was in a flock of chittering birds, and it was driving me crazy! I went away into that quiet place in my head which helps to keep my sane, but it was hard. Luckily I found a corner to hide in, so no one tried to get me to chat to them, but it was still awful. When I’m in a group of women, more than in any other situation, I am made so aware of the fact that I seem to have been absent the day they handed out the rule book. They have this way of interacting that is totally alien to me. I don’t understand their conversation. I don’t understand their actions. They seem to communicate on a level that I can’t hear.

Anyway, I got through that and ended up at the church for the wedding. The wedding itself was fine. It doesn’t require much interaction from me, so the chances of making a major social gaffe are quite small. The problem is what comes afterwards. The hugging. The kissing. The conversations. Basically, the social interactions. Do you tell someone that they look beautiful when they don’t? Do you tell someone you love their dress when you don’t? How do you catch up with all those people you haven’t seen for a while, when you can’t recognise them? How do you concentrate on one conversation at a time, when there is so much noise all around? It’s all so confusing. Sensory overload!

Finally, the reception… Again, more things that are not like the movies. The couple get up to do their bridal dance (so often called a Bridal Waltz, but doesn’t involve any waltzing whatsoever). The dance floor is then opened for others to dance, but no one wants to dance. They all huddle around ignoring the dance floor. I want to dance! Can I dance on my own? Can I ask someone to dance? What are the rules? The bride goes around asking people to go dance. I want to! I want to look like I am having a good time. Why won’t anyone dance? What’s the point of having a dance floor if no one dances?

And then, it’s time to leave. I line up to say goodbye to the couple. I patiently wait my turn whilst some guests take forever to say goodbye. Others get impatient and push in front of me. I don’t get it. I am obviously standing in line. There are people standing behind me. What kind of person cuts the queue at a wedding? Yet it happens all the time. How do you handle it? It seems a bit much to tell someone off under the circumstances, but it’s really really frustrating. Hey, I want to leave too. I have a long drive home ahead of me. Get in line!

Sigh. So there you have it. Another wedding under my belt, and I still don’t know the rules.

Anyway, back to boundaries…

When I was a child people were always wanting to touch me. I hated it. I still hate it. I don’t understand how people can just go up to children or babies and pick them up or stroke them or whatever. It’s just plain rude if you don’t have a close relationship with them. I remember hating it as a child, so I won’t do it to other children. Yes, I’m happy to cuddle my nephews – they know me and we have a relationship where they are fine with that. I would never, however, do that to my friends’ children who don’t know me that well. In like manner, I’m not comfortable with people just hugging or kissing me. I’m not used to it. If I have a close relationship with someone, it’s fine, but the whole social greeting kissy kissy thing grosses me out. We’re not friends, so why are you kissing me and expecting me to kiss you back? Of course the fact that I often fail to recognise people due to my face blindness really doesn’t help. It’s like, Why are you kissing me when I don’t even know who you are?

The physical boundaries are probably due to a number of things. Undoubtedly there actually is a cultural aspect; growing up, my family was never outwardly affectionate. I’m not saying that we were lacking in love, but there wasn’t much hugging and kissing or anything like that. The other issue is my tactile sensitivity, which apparently is not uncommon among aspies. I don’t want to get into that now, but I really don’t like people touching me!

Well, let’s look at emotional boundaries. I’ve often been accused of being cold, uncaring, standoffish, unsocial and so on. Am I? Is needing my own space selfish and immature? I don’t think so. In fact, I think everyone needs personal time, and everyone needs social time. It’s just that we all need them in various ratios. The more time I spend with people, the more time I need to spend on my own. Friends have made me feel guilty for this in the past, but you know what? I refuse to feel bad about it now. Why should I force myself to constantly be with people, to the extent that I feel like I’m going crazy inside my head and about to explode? I recognise the warning signals now of when I am at my limit and need a breather, and I take it. It keeps me sane, and is actually more beneficial to my relationships than enforced fellowship.

Why is it so hard for people to accept boundaries? I’m not even asking anyone to understand – just accept the fact that I need space. Actually, it seems to be acceptable for guys, but because I’m a single girl I’m apparently not supposed to need it. In fact, I don’t even know why people don’t understand it. It makes perfect sense to me, but then, that’s what autism is like, isn’t it? Everything makes sense inside our heads – why doesn’t anyone else understand? It’s the world outside out heads that’s so confusing, alien and frustrating.

First of all, the trip which I had been informed would take about 5 1/2 hours each way only took about 3 hours. Secondly, although I was in a car alone with someone I had never met before, he turned out to be pleasant enough company. Finally, I’ve been realising that I don’t need to “push” myself to be more social than is comfortable. Not, I said “comfortable” – I do need to push myself to be more sociable than comes naturally, but I’m learning to recognise my limits. In the evenings, I spent a pleasant time sitting outside reading by myself, rather than sitting and chatting with everyone. I wasn’t sulking or in a bad mood or anything like that. I just enjoy solitude, especially after a full day of socialising. Fortunately the people I was with were happy to leave me alone. I think my “closer” friends wouldn’t have done that, and would have tried to draw me out and so on. I don’t know if these people left me alone because they are not really my friends, and thus didn’t care or even notice that I was sitting by myself, or if my usual group just don’t understand. I’ve always found it frustrating to spend time with my friends, because they seem to be offended by my personal boundaries. I just need space! I thought it was simply that I didn’t like people very much, but now I’m beginning to wonder if my difficulties have to do with the particular people I’ve been hanging around with.

Anyway, the trip went well, and I am still amazed at what a good time I had. I normally avoid going away with friends for any length of time, because I have found in the past that when I go away with friends, I come home without any. Am I growing up at last? Or do I just need a new circle of friends?

My brother had planned a family trip over the weekend. I wasn’t looking forward to it for a number of reasons. Firstly, I don’t like spending time with my family. Secondly, I don’t like being away from home. Thirdly, I get travel sick and I was told that our destination was a good 5-6 hours drive away. Regardless, I resigned myself to go since it was meant to be a chance for the family to get away together and have a good time. Two days before the trip, I found out that my parents were not going; rather a bunch of my brother’s friends were going instead. Two nights and three days with a bunch of strangers, not to mention that I was expected to car pool with one of his friends. What a nightmare!

I was really upset that my brother hadn’t bothered to say anything to me before making these arrangements. Surely it would just be polite to check how I felt first? Fortunately I discovered the arrangement before the trip instead of just finding out upon departure. Even so, my instinct was to cancel, but my brother got very upset over the idea. I got upset that he got upset. I’m not sure what I was most upset about, the prospect of being stuck with strangers for the whole weekend, or the fact that my brother was being so insensitive. I suspect it was the latter. Yes, the idea of the trip was extremely stressful for me, but that wouldn’t really hurt my feelings. Even if I didn’t have any problems with social interaction, it would have been nice to tell me what was going on. I hate it when people spring surprises on me and expect me to just take it in stride. I know that we can’t control everything that goes on around us, and unexpected things are inevitable, but can’t we at least try to minimise them? For example, I know that my brother couldn’t stop my parents from cancelling on the  trip. What he should have done, was to let me know, and ask how I felt about going with his friends instead. Sigh. We can’t control the actions of others; we can only control how we respond.

Anyway, I hope 2011 proves a fruitful one for this blog, and that my readers will be encourage by my musings and experiences.

According to Dictionary.com a simulacrum is a slight, unreal, or superficial likeness or semblance. I go around pretending to be human, but I’m really not very good at it. I analyse my speech and actions, trying to make myself appear normal. I feel like I’m from another planet, trying to assimilate to the very alien earth culture. It’s gotten me by so far, and as far as I am aware most people consider me “eccentric” but not insane or psychopathic. Personally, I’ve often wondered whether or not I’m a psychopath but that’s a discussion for another day.

Last week I had lunch at a friend’s house. She had invited several other friends along whom I generally get on with all right. I suppose you could call all us friends, but I use the word very lightly. I don’t have the kind of friendships where I would call someone up “just for a chat”, and I definitely don’t have the kind of girlfriends portrayed in shows like Sex in the City. To me, friends are people who are more than slight acquaintances. They’re people that are basically not total strangers, and are not enemies. Even with that broad definition, I have very few friends. Anyway, back to the lunch…

Overall, I felt it went well. The conversation didn’t seem to lag, and everyone seemed happy. I, however, was not. All week I felt grumpy and depressed, and I didn’t know why. I thought it was the weather, or maybe just my hormones. Finally, I realised what it was. It was that lunch. I was upset because I felt that I hadn’t handled myself very well. I monopolised the conversation too much. I was more open than I should have been. I can’t remember whether my table manners were perfect or not… Did I speak with my mouth full? Did I drink too much? Did I eat too much? Did I interrupt people when they were talking? Did I change topics too abruptly? Did I help enough during the preparation and clean up? The questions plaguing my mind are endless.

Do other people think about things this much? The psychologist I was seeing told me that I think too much. That I already know the correct way to behave, so I should just do it without questioning. I guess I do know the correct way to behave, but for me it’s a very intellectual knowing. Correct behaviour doesn’t happen automatically.

Finally realising what was the cause for my week long bad mood didn’t resolve anything. It helped me to stop taking out my grumpiness on innocent bystanders, but I still felt awful. It was only when I met up with another friend and confessed my “failings” over that lunch, and my subsequent guilt, that I started feeling better. That I even realised that it was guilt that I was feeling. Guilt over not being perfect. She was amazed, and assured me that she often spoke too much, over-shared etc. All the things I felt so awful about doing. I guess when you list them out, it does sound ridiculous to be so upset about it. I guess in my mind, I had failed my mission, so to speak. Another social engagement where I failed to appear innocuously human. Normal.

It would be so freeing to not be plagued by these thoughts and expectations. If I could relax enough to just enjoy having lunch with my friends without having to think so hard, I might end up actually developing real relationships. But I can’t. When I do start to relax around people, I inevitably end up realising how alien I am compared to them, or rather, how alien they are to me. People are always saying that I am peculiar, but they never seem to realised that I feel the same way about them. To me, I am normal, and the rest of the world is odd and incomprehensible. I want to stop over-analysing my social interactions, but at what point is the analysis overdone? If I don’t think about it at all, there is no way that I would behave  in an acceptable manner. Left to my own devices, I would end up hiding in a snug spot talking to myself. How do you know how much to think?

I have always had difficulty recognising people’s faces. I can’t even recognise my own parents, so I know it’s not just a matter of familiarity. It’s something that has always been there, so I don’t really think about it much, but there are certainly times when it is very stressful.

For example, I was shopping with my parents in Kmart one day. Dad had gone off to look at something, and I needed to find him (this is in the days before mobile phones, incidentally). I walked right past him without recognising him. Fortunately he saw me, and called out to me. I have no trouble recognising voices, so I was able to figure out who he was.

A more recent example happened the other day. My friends were having lunch at a food court, and I went to join them later. They had told me where they were, but confronted with a food court of people, all I could see was a mass of faces that I had no hope of recognising. I ended up wandering around with my ears peeled, hoping to hear one of their voices. Not as easy as it seems, as I also tend to go into sensory overload in places like that (a topic for another post). I found them eventually and life goes on.

These examples may not seem that serious, but can you imagine what it would be like to not be able to recognise your own children? I don’t have any children yet, but the thought of that is very distressing. Will I ever be able to see my child in a school concert or sport’s event and recognise them? Or what if I am attacked one day? I will be completely unable to identify my assailant with any sort of confidence.

And let’s not forget about problems this causes with social interactions. Aspies are already disadvantaged when it comes to social interactions. Relationships of any sort are extremely difficult. I have often been accused of lacking empathy, being cold towards people, and of being rude to them and ignoring them. Well, many times it’s the simple fact that I don’t recognise people. I don’t greet people when I see them, because as far as I can tell, they are total strangers to me. If someone speaks to me, after a while I’ll generally be able to figure out who they are, but it takes some time. The better I know someone, the faster I’ll recognise them, but it still takes some effort.

The most annoying aspect of this condition though, is dealing with people’s ignorance. I can accept the fact that other people don’t have this problem and don’t realise that I do. However, my close friends and family are aware of it (though they don’t realise I have Asperger’s Syndrome) but they still don’t really accept it. I have been told that I just need to “make more effort”, to “care more about people” in order to recognise them. It’s so frustrating hearing hurtful things like this. If I can’t even recognise my own family members, it’s surely not just a matter of “caring”. As for “trying harder”, what does that even mean? How am I supposed to “try harder” at recognising people? Actually, I think I probably end up making more effort than others; since I can’t recognise people’s faces, I have to memorise as much other information about people as possible to help me to recognise them.

What is it about people’s faces that makes them so difficult to recognise? I think it’s a combination of things. First of all, nothing seems to stand out to me. When I look at people there is very little that my mind can “cling” to. If someone has as a distinctive hairstyle or smile or something, it’s a lot easier for me to recognise them. The other problem though, is that people look different every time I see them. They change their hair, their expression, their clothes… If nothing changes, I can generally recognise them. Change anything, and they look like a completely different person to me. The plus side to this, is that I have no trouble at all telling the difference between identical twins. I know one pair of sisters whom I didn’t even realise were related to each other, until I was informed they are actually identical twins.